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Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Diagnosis

Anna48
Posted by

Hi I've not been on here for a long time.Over 3 years ago I was told I had womb cancer. I was put on 6 monthly biopsies as was not ready for a hysterectomy. During these 3 years + my biopsies were forever changing.

I have now been told my biopsy shows complex hyperplasia with atypia suspicious of adenocarcinoma. I have my op date however am not convinced of my diagnosis.

Any views??

Fairycake
Posted by

Hello I just thought I’d pop in and say hello and welcome. I noticed you hadn’t had any replies to your post. My experience is very different to yours so I can’t offer any relevant experience but I’m sure some ladies who have will pop in soon. I know it’s much harder to speak to medical staff just now but do you have a Clinical Nurse Specialist who you could discuss your concerns with? Or you could possibly ring your consultants secretary and ask for a phone conversation with the consultant and ask them to explain their diagnosis in more detail. I hope you get the answers you need and that every goes well for you when you have your op. Take care. 

Anna48
Posted by

Sadly, the original nurse went off again and her cover nurse seems too busy to want to speak to me. I feel so extremely alone as live on my own, have no family or local friends and have basically been left to get on with it.....

I have been totally emotionally neglected in considering my personal, horrendous & maternal torterous experiences.

I am in turmoil over my real diagnosis and although requested don't know my exact results, have not had an MRI as requested, have not received a letter confirming hospital admittance address or time therefore can not make concrete arrangements for a care plan... In my own mind.. Cats & dog... And me for after care..

However, thanks for your reply.

GBear
Posted by

Hello ,

I believe especially at the moment that there is real concerns about cancer being the forgotten c or even other very complex conditions. Its understandably frustrating for you not to have a real proper discussion of your condition or a letter detailing the where and when for your op and just being able to understand what's happening and waiting on an MRI too. Lots of things have been delayed or cancelled due to corona virus but it also doesn't really excuse no one in your medical team being able to talk to you about it. My experience like is very different i was diagnosed with womb cancer after having irregular bleeding and because they felt there was a real risk it had spread out the womb i was given no option but to have a hysterectomy straight away, lucky that it hadn't spread so no further treatment,  but I just wanted to reach out and say that I understand the frustration and understandable fears, its much harder when your alone and unable to discuss these things I am lucky to have family and friends but I keep so much back from them too because I feel that they can't understand, so I know being able to speak with someone who does understands is so important so I hope one of the other ladies may pop up who have had a similar situation. 

  GBear Xxxx 

What is a Community Champion?    Womb cancer forum  

Call the helpline for free on 08088080000, 8am to 8pm everyday.

“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies

Anna48
Posted by

Thank you for your reply I appreciate your input. I'm still hoping someone will contact me as my op is on Tuesday. I'm struggling and am afraid I will back out again. I just feel there is little understanding of this fear xx

Fairycake
Posted by

Hello again   I’m so sorry that you’re feeling so afraid and alone right now. I think you’re in a horrible limbo state where no one is able to get back to you and that’s such a hard place to be. Im sure many of us here remember the various fears we had during the waiting stage. I wonder if your GP might be able to speak to them for you? I can only send you a gentle hug and say that I hope everything goes well for you x

Anna48
Posted by

Hi Fairy cake I have left messages for the nurse to ring me but she went off just after I got my op date and her colleague whom I haven't met is busy. I'm still waiting for my letter confirming my op date on Tuesday as its not at a hospital I have ever visited. I'm having my covid test tomorrow at another hospital in outpatients. Its all a bit uncertain but what will be will be...TThank you xx

GBear
Posted by

Good luck with your test and your op on Tuesday , I do hope they can phone you soon and give you some reassurance and also directions to this other hospital and the procedure for the day, times to get there etc. 

  GBear Xxxx 

What is a Community Champion?    Womb cancer forum  

Call the helpline for free on 08088080000, 8am to 8pm everyday.

“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies

Anna48
Posted by

Thank you GBear... I got a call this afternoon. I spoke to the nurse and she confirmed its grade 1. Fingers crossed its no worse. Had a busy day with phone calls to organise support. Almost there... Still nervous.. Fear of the unknown..Xxx

Shell56
Posted by

Hi Anna48

  • I too am in a similar situation I had to go to a hospital I had not been to before for my covid test and pre assessment. I am due my op friday as long as tests are  clear.  I am assuming they will ring me if they arent but information at the moment is very hit and miss. Leaving people like me in the dark just waiting...but hopefully our op will be over with soon. 
  • Sending gentle hugs and wish you all the best xx
  • Shell
Shell
NannyAnny
Posted by

Hi , and ,

If it's any consolation I had a lot of trouble before my operation with the date being changed, and that was well before the virus! They suddenly called me for a pre op on a Friday before the operation on a Tuesday. I spent all day at the hospital having a pre-op and a chest Xray. I arrived home to find that the hospital had cancelled the operation for another 2 weeks. It turned out they had an emergency admission!!!

I, too worried about the operation, being 72 at the time. I worried about my blood pressure, but that behaved itself! I worried about the anesthetic, but that was fine, just made me terribly thirsty. I worried about recovery. I had keyhole surgery, which is the most marvelous invention!!! I recovered well, and I can honestly say the pain was less than having my tonsils out in my 20's!!!

I'm sure you will both be fine. xxxxx   

Lesley M
Posted by

Hi 

My name is Lesley I have been through a very traumatic 6 months but I have survived it pls message me with any concerns or questions x

Anna48
Posted by

Hi Shell went for my covid test today. I had been shielding as per instructions only to find the hospital was mixing patients within the waiting room... I had my test but now have concerns that my shield has been breached. My op is scheduled for Tuesday and I am finally feeling I can do it... I only hope they don't now postpone.

Please keep in touch to let me know how you are. Take good care xx

Anna48
Posted by

Hi NannyAnny

I admire you... Im 20 years younger and so afraid. I too have other health issues. Pain and anesthetic are my worries too although I have a good threshold normally... Fear of what's to come. I will be relieved when it's over.

Thank you for your reassurance. Xxx

Anna48
Posted by

Hi Lesley how are you. Have you had your op. How did it go? How long was it before you got your results? Did you need any further treatment.

I hope you are bearing up xxx